Monday, March 28, 2011

I got a 68 on a quiz today. And I *studied* for the quiz. I had already read all the material. I re-read 15 journal articles in preparation!

I just want to cry. I don't know if this is the effect of my mother's situation, or instead the effect of the vast difference between my use of language, as a former editor, and ABA language, which seems awfully imprecise to me.

Sunday, March 27, 2011

Maybe I should call it Glass Beach. That's why I went. On the day that my mother did not respond to me/to my presence, I went for sea glass to the beach where we launch our dinghy, and where I typically find numerous pieces of sea glass.

I wasn't alone there, so I cut the visit short. I did pick up maybe 30 pieces, including one ceramic piece with a blue pattern.

Obviously, there were obstacles on this and a subsequent visit. Quite unexpected. It looks like the heavy three-bin object washed ashore. It is attached by line to the stone wall. The driftwood 'fence' (lower picture) may have been erected by children playing cops 'n robbers. I hope that it was. What with last year's attempted claiming of our dinghy and the occasional snarky homeowner muttering things, we are beginning to feel unwelcome in the community where we have our mooring.

I forgot to mention(!) that I turned in (a draft of) my thesis. I finished on Wednesday, March 16. I had thought that it was due on Monday the 14th, and that would have been awful because I was still straightening out the References page. On the day that it was due, I tried to deliver it to my thesis advisor, and failed (her office was closed). But I turned it in on Thursday, and that enormous project is finished. It ran to 87 pages.

We were supposed to go to New Orleans during May -- my husband's national business meeting was being held there. That meeting got canceled, and so we decided that we are going back to Hatteras.

It has been two years since we were last there! I need to go through recipes to plot out our menus. I need to begin a packing list. I need to start a countdown to departure. I am so ready to get this trip under way.

This time, we are staying the furthest south we have every stayed: in Hatteras, the last community on the island. Hatteras is the point of ferry departure for Ocracoke (next island). Ocracoke is the point of water-taxi departure for Portsmouth (next island, deserted, with astonishing beachcombing). Above are pics of the actual property. It has both a sea view and a sound view.

NPO is hospital-speak for "nothing by mouth." We are not forcing Mom to rely on the feeding tube any longer. It is probable that pneumonia will result, but she is steadfast in hating that tube -- even though she is also in denial about what aspiration will ultimately mean.

This week was a pretty horrible week for visiting. On Thursday, she could not (or would not) wake. She always responds to our voices, but I could not get any response. Once I touched her face, and her eyelids fluttered and she said "I know" after I self-identified, but she often says "I know" to cover her deafness. I felt sure that I was going to get a call in the middle of the night that night.

She was alert Friday morning, but pretty much the rest of the week she was out of it. She wanted to make herself tea, and she kept insisting that staff had "snatched" her as she was walking home, to imprison her in that room.

We visited the Kaplan Hospice House in Danversport. It is a lovely place. But she would have to go off dialysis to be there, and she is not going to opt for that when she is experiencing so much denial about her condition.

Friday, March 18, 2011

Palliative Care is a not-often-used option with Hospice of the North Shore. It's not end-of-life care, not yet. It's penultimate to end-of-life care. That is what we opted for today.

Mom was very tired and confused when we met at the hospital. We talked about visits over the weekend and where she most wants to be. She knows that she's going to be confined to a bed, no matter where she is.

Ann Curry on the NBC Nightly News just said that Japan is suffering a tragedy like "no other country" has ever had to face.

Now, I feel horrible for the people of Japan. It is unthinkable, what they are going through. But just more than six years ago, Indonesia lost about 250,000 people (yes, that's a quarter-million) in the Boxing Day tsunami. So I can think of at least one other country that has had to face the same horror.

I really hope no one who was in Indonesia on that terrible day had to hear tonight's broadcast.

Thursday, March 17, 2011

Today the hospital is pressing again for hospice. Mom has had three days with the feeding tube, the first two in terrible pain. Why even present the feeding tube as an option? If we had known that it felt like being shot in the gut, would we have said Yes? I feel like she hasn't even gotten one extra day out of that decision, and now the professionals want to file her away.

I get it that she is at the end of her life. But I don't know that she completely gets it.

She looked quite frail last night, and I could barely understand her speech. She is developing bedsores on her back and bum. She wasn't confused, however.

Tuesday, March 15, 2011

A picture from the BBC. The video images that I keep seeing of boats being propelled down streets, through doorways -- there is something about that blurring of the boundary between land and sea that makes it clear how devastating the events in Japan were.

I cried while driving to school after visiting my mother yesterday. Of course we had elected to have a feeding tube inserted. What we (or what I) did not realize is that it is a terribly painful procedure.

Her face was bright pink, cheeks almost red, and she moaned and said, "It hurts, it hurts" even before she knew that I was there. What she told me when aware of my presence was, "I don't want it."

I shared that we did not know what else to do when she was aspirating anything she took by mouth. She seemed to hear me in the moment. But it turns out that my eldest sister had also shared that information just an hour earlier. And does knowing "why" help with the ghastliness of pain? The nurses said that she would shortly receive a dose of morphine. That's another shock.

Thursday, March 10, 2011

Today the hospital presented our choice as:1) Have our mother move on to hospice to die, probably of pneumonia.2) Have doctors insert a feeding tube so as to postpone, for an unknown period of time, the inevitability of death.

It is unthinkable to let a person starve to death, pneumonia or no.

Meanwhile, our daughter is now in the hospital because of what appears to be a GI bleed.

Tuesday, March 8, 2011

They are doing evaluations at the hospital that are designed to assess my mother's ability to swallow and her overall neurological functioning.

They are not optimistic and are saying that she is likely to need a feeding tube [frightening]. She has barely participated in the evals because she is so weak, having eaten next to nothing for a few weeks now.

Victor says that they gestured toward her chest when they spoke about the tube. I hope that's where it is intended to go, because if it goes through her mouth, communication will be done. She slurs now as a result of the stroke, but she is decipherable. She has a voice, as Colin Firth has famously said.

Last night, while I was sitting in my mother's hospital room, a doctor came in to share that she did, in fact, have a stroke. Deep in the brain, where autonomic functions are controlled. So they aren't sure that she can even swallow.

Her speech is slurred, and she cannot move her right hand. And she is right handed.

How much more can her body take? And yet she does not seem to want to be DNR. If CPR became necessary, her ribs would certainly be fractured, she is so frail. But who can argue with the will to live?

Monday, March 7, 2011

Top picture is a satellite image, from the Japanese Alos spacecraft via the BBC, of the earthquake in NZ.Next is a road that we know we followed 11 months ago.And here is a beautifully written piece by a person who was there. It conveys what I feared about quake-striken Christchurch and Lyttleton: now, it seems, there is no terra firma. Disorienting and terrifying. More than 10,000 homes, buildings, and historic structures cannot be rebuilt due to liquefaction, described as turning solid ground into toothpaste.http://www.bbc.co.uk/news/world-asia-pacific-12664290

Sunday, March 6, 2011

My mother is on her way back to Beverly Hospital. Two siblings visited today, separately, and each noticed that -- for the fifth or sixth day in a row -- she was mysteriously very sweaty. This was brought to the staff's attention on Thursday.

Today she refused to let her daughter manipulate the bed so that she could sit up. Then, when my brother visited this evening, she could not move her right side. This scares me a great deal.

Why is it that visitors, and not the people who are paid to work with my mother, find these things and report on them? My brother had to make a fuss, by the family's report, before staff agreed to take any action on the absence of movement on my mother's right side. So now I sit by the phone.

Friday, March 4, 2011

According to the BBC (over the course of the past week), up to 22 bodies lay under the collapsed spire of the Christchurch Cathedral. When I heard this, I immediately regretted putting a picture of the landmark in its destroyed condition on this blog.

Today: The rubble has been cleared, and no one was trapped, no one was killed, the site is "clean." Even with so much devastation, that feels like good news.

Thursday, March 3, 2011

My mother developed a superbug pneumonia toward the end of her stay at hospital-level rehab. In addition, MGH phoned to say that she had been exposed to TB. And now she's at Blueberry Hill, a skilled nursing facility, in Beverly. She appears to really like her room.

She requires what they call "maximum assist" with the tasks of daily living at this time. I'm not sure whether to regenerate hope (and challenge her) or continue to feed her food by spoon nearly daily.

I have to go with the former at this time, because my thesis is due in 10 days, and my ABA professors are a pair of...let's just say I can't believe they are respected as educators. I already knew that one of them had delusional ideas about workload. Now the other, more famous one is encouraging us to be more "scholarly." You know, I don't think I lack that quality. I think that when one is engaged round-the-clock in scholarly pursuits, one does not need to strive for "scholarly" status.

She doesn't actually follow baseball...Yes, that is the Liberty Bell. I didn't realize that it was not called 'Liberty Bell' until the days when abolition of slavery became the topic. I like that association.I did, however, find the bell much smaller than I expected it to be.

The harbor from two ends, one before, one after.Picture #2 and picture #3 depict the same building, in part. In the 'before' picture (#3), you can barely see it, straight up from the arched window, at the skyline.